The Ride Continues

So much has transpired since my last post, and yet virtually no progress has been made. Frustration seems to be the name of the game at the NICU. Parental will simply has no impact on the ability of our tiny little babies to get well, to grow, to breath.

Cailin's status hasn't changed much, but to get to this point has been more trying that I could possibly explain to anyone that hasn't had a child in the NICU. I last posted on Friday night. Saturday was a good day, followed by another rough night. Sunday was amazing--oxygen levels down, vent pressures down, discussion of possible feeds the next day. Happy parents, hopeful parents. Parents of a child that was back on the path out of the NICU. In truth, parents that still hadn't learned what giving birth to a "24 weeker" really means.

Monday the trouble began anew. Her lungs simply stopped working as well as they had been. All the progress on oxygen levels and vent pressures was lost, and then a lot more. We were walking backwards. By our visit last night things were a little better--she was stable at least.

And that continued until this morning, when, at around 9:30 AM, Lauren got our first call from the doctor--previously we had called the NICU for status many times, but they had never felt the need to call us. This call brought bad news; Caili had taken a turn for the worse, and despite their efforts she wasn't improving. The doctor--an incredibly kind woman that happens to be a member of the church at which Lauren and I were married and still attend--was "concerned."

I left work, picked up Lauren and her Mom (who thankfully had already been on her way when Lauren got the call) at home, and off we went to the NICU. I can't describe the sheer terror of the site that greeted our arrival; a team of doctors, nurses and a respiratory therapist gathered around Caili's isolette working frantically, looking concerned. Monitors flashing numbers that were too low, the incessant alarms silenced. I'm sorry for those of you that can relate.

We have been told that seemingly small problems can mean very big changes in our daughter, and we're just beginning to see how true that is. Because of this, doctors must react to a problem based on what evidence is available at that very moment. If they wait for test results, it may be too late. So, if Cailin is havng a significant issue that could be indicative of 3 different causes, they simply treat all 3 while they wait for the test results.

Before we had arrived this morning they had tried changing her ventilator--they moved her to an oscillator (likened to a VW engine by a friend whose son was on one too)--and for the second time Caili didn't like it. Back to the jet ventilator. They then began to treat what they thought might be pulmonary hypertension. And they gave her blood--a tiny amount, but she has so little, and she simply can't replace all that they take for the many tests they must do. And they made other changes; stopping medications, starting new ones.

The net effect was that she stabilized within 30 minutes of our arrival--thank goodness. She continued to be stable, although the ventilator is still not doing what it needs to do. Setting the jet is much more an art than a science. They change the settings, test her blood gas, and change them some more. Hopefully the changes they made before visiting hours ended at 10 tonight will have the desired effect, and we'll awake to good news. If they can just get her stable, they can start feeding her again. At first it won't be for sustenance, but more to "prime" her underdeveloped digestive system--for now nutrition comes by way of an IV. But when she can tolerate a steady increase in feeding and they get to a point where it becomes sustenance, it will be invaluable to her ongoing growth and development.

For those of you that read this far into this long post, I should note that the other parents in the NICU, the doctors, and our friends that have been through this all say the same thing; that while Caili's path through the NICU will be unique as it is for every child, it has thus far not been any better or worse than is expected. There is still every reason to be hopeful and optimistic despite the fact that there are undoubtedly many bumps in the road ahead.

As always, thank you for your thoughts and prayers, and for taking the time to read about Caili's progress.